"I have not gone dancing madly into fields of joy just because of the joy. It's more because I had to get out of this muck and stumbled into fields of joy."
- Cecilie Kwiat
For the better part of my stay in Moscow, the feeling has similarly been a feeling of joy. And just as the quote, I have stumbled from the muck that characterizes my life these days. Well, I have MS, in my world stumbling is a synonym for walking and muck is a synonyn for ground surface so that is not so strange, but the feeling of joy is something to treasure. Empowered by my experience in isolation, I am ready for the last major infusion - Mabthera.
At first though, it feels that I am not ready for life outside my chamber after leaving isolation so suddenly on the fifth day. I do, however, manage to venture out and watch a stem cell party from a distance, and keep creeping back into the solitude of my room after my release.
However, on the following day I feel mentally prepared to leave my room and go out for my first walk. with mask, even if Dr. F insists that my leukocyte levels are so high, that I don’t need one. I don’t walk so far, but considering all of the chemo, the fact that my legs are mere bones with skin dangling off of them, I still manage a decent walk.
Returning form my walk, I meet Dr. F on his way out of the ward and as always he grabs, touches, hugs and asks how I am. We start talking about meditation and he is excited. He mentions how he wishes he had more time to research things like this, but in the case of meditation, is well aware of the benefits. I tell him it just so happens that I read about a study posted on the Russia HSCT for MS & Autoimmune Diseases Facebook site concerning fasting before receiving chemo. He perks up and enthusiastically asks that I send over any research I can find about it. I ask him what he thinks about me fasting before the mabthera treatment and he says he will get back to me.
I am interested in the effects of fasting and have done several three day fasts over the past year; the last one in March this year. During a normal week I generally fast at least one day and practice intermittent fasting several days per week, where I only eat within an 8 hour window between noon and 8 pm. This gives me several 16 hour fasts per week. Why?
Well, I mentioned earlier that I am a self-help expert. You know the guy who has read the latest book-of-truth, or in this case blog or study, goes on a kick, and fully lives out this newly discovered truth...until the next theory comes along. Now, the kick happens to be health and healing ‘truths’. To be totally honest though, I don’t have a clue what really works, really. Fasting is said to reboot your immune system and increase the production of stem cells. But who knows?
That is what is great about speaking with others at the hospital and hearing about their own explorations when it comes to foods and alternative treatments. Everyone is trying everything and has at least one nutty thing that they have tried. Not to brag here, but I do think I generally win the competition for the most extreme (absurd?) attempts at healing. How about meditating in just shorts out in the snow during the middle of winter in subfreezing temperatures? Can anyone top that? Didn’t think so.
What I do know is that I don’t feel like I have any other options. When I meet my neurologist, she is usually drilled with questions, like “Can we test my blood levels – are there deficiencies? What about my hormone levels – are they normal? What about heavy metals – are my levels high? What about my ph–levels – how is my ph-balance?” I steadfastly receive the same answer to all these questions:
- On what grounds should we text ph-levels? There is no proof that ph-levels are connected to MS.
- On what grounds…, on what grounds…, on what grounds…?
- Here take a prescription for pills to help you with your bladder.
- How about some anti-depressants for your anguish over your imminent date with a wheelchair?
- Even better, skip the anti-depressants and just go pick up a wheelchair.
- And, BTW, just keep following my lead and within no time you will be able to upgrade that wheelchair to one of those really cool ones with a neat little electronic joystick! Oh joy. We will even include a neat little horn to beep at people who are in the way. The world will be at your fingertips! Not your feet though.
From her perspective, I am definately demanding, but I just want to know how I can optimize my body, In the MS world, as it seems, you must find out how to do this on your own. For me this means a tendency to become fanatical - but I suppose that this gives me a feeling of control.
So, yes, I do become preacher-like when it comes these things, but, I really don’t know more than the latest study that I have read – which is little. The anti-inflammatory spices and omega-3 fatty acids I have mentioned, as an example, are just things I have read about on Joe MS’s cure-all-diet blog (deemed a reliable source by someone) and it never surprises me to find an article the next day that says the exact opposite.
So, with this said, let me phrase it like this, all of these ideas about anti-inflammatory diets, healthy oils and fasting are simply narratives that I choose to believe in. So it is with chronic disease in the modern world; it is really about choosing the narrative that fits best with your own story of what you believe will lead you to healing – learn to believe in it, apply it and most importantly listen to your body.
Actually, there are real scientific studies that show some interesting results when it comes to fasting and its effects on cell destruction, cell production and cell protection. These are the studies that I send to Dr. F and he, always grateful for new research, takes the time to read them and gets back to me the next day with his assessment.
The short end of it is, that when the body is fasting it goes into survival mode and protects its strongest cells and leaves the sick and older cells vulnerable. In tests done on rats with different forms of cancer, this has shown to increase the effects of chemo, since the ‘faulty’ cells are left open for attack by the chemo. In other words, you are putting larger targets on the cancer cells while protecting healthy cells. As Dr. F points out though, cancer cells and ‘B-cells’, which Mathbera targets, are not the same and there are no studies done on this with regard to this antibody.
Regardless, my idea is that when I receive my last dose of Mabthera designed to knock out any surviving B-cells from my old system, then any healthy cells as well as different organs, which might otherwise be damaged by the poisons being infused, will be some how be protected. Also the hope is that my body will feel minimal side effects and have an easier time recovering after all of the treatments are finished, as the studies suggest.
When he gets back to me, he mentions that, the study, although unproven from an HSCT perspective, does not pose any risks that he could see: “So try it if you want. It sounds interesting.” So I start immediately.
Mabthera Treatment and Fasting
Once again, time to be transparent.
It should be noted - I am an eater. I have always eaten anything and everything. Blessed with a super metabolism, I could eat and eat and never show an ounce of fat on my body. Eating as much as I want and whatever I want, has characterized my life up until the past few years. Throughout this time I have consitently maintained a weight of 205 lbs (93 kg).
Once while out to dinner I looked my wife straight in the eye and said: "Do you know why I love you so much?" Her bright smile lit up the corner of the restaurant where we sat. "Because you never eat up all of the food on your plate - and I always get your scraps." On the topic of transparency, you have noticed that I am also romantic. The point is though, fasting has been as foreign (and absurd) to me as arriving five minutes early, starting a project ahead of time or meditating in the snow in underwear (ok I admit it, it was in my underwear - not shorts).
Crisis can change you.
Anyway, the treatment starts Saturday at around 10 am, and I have just eaten second Breakfast (shire music playing in background) and start immediately drinking water for the rest of the day. The following day I drink herbal tea 2 times during the day, which contains no calories and gulp down tons of water. By the time the treatment has started I get in 46 hours before the beginning of the treatment and break the fast the following day with a cup of rose hip soup. That gives the mabthera 24 hours to work in my fasting body. Hopefully optimally.
Some general side of effects of Mabthera can be, weakness, nausea, headaches, pressure on chest, irregular heartbeats, coughing, runny nose, throat irritation, vomiting and diarrhea. Although for the first four hours I do not feel anything! Well, I am sleeping. And in my sleep I have a Sicilian vision of how the mathbera is pulsing through my veins wreaking havoc on my naughty B-cells. Robert De Niro’s maffia voice echoes in waves throughout my body. But before I give voice to the vision...
A word on ‘Mabthera’ and Spelling
“Fredo, you’re my older brother, and I love you. But don’t ever take sides with anyone against the family again. Ever.”
- Michael Corleone
Now, I am without a doubt the worst spelling English teacher on the planet. When writing this blog, I only have Swedish spell checker installed, so there are all kinds of interesting spellings that turn up; Mabthera is one such spelling.
I have in an earlier post misspelled mabthera - “mabutera”, which was pointed out to me on Facebook by one of my grandparent’s old neighbors. As I mentioned earlier, my grandfather was from Sicily and so my mother’s maiden name is Butera. So I was asked by her if there is any deeper message in this. And if you have followed me thus far, you know that their will definately follow a deeper analysis here, probably about coincidences, subliminal messages, bla, bla. So to this I say - YES! Of course there is a deeper message here! And this one is going to blow you away! So prepare yourself.
The message of my unconcious misspelling 'MaButer' can only mean one thing - that my Butera heritage, a family once struggling to adapt to the American culture and language, has passed on their struggles over two generations and severely affected my spelling abilities. So that's the meaning here.
Or perhaps there is another message here. The spirit of my dearest grandmother “ma Butera”, who passed away two years ago, is entering me through the mabthera to help me heal. This is a nice thought, but Nanny, as we called her, the Episcopalian from Northern Florida, is not the formidable force that I envision taking care of my corrupt B-cells. I can hear her voice entering my blood stream. “My heavens, what y’all getin’ up to here in my precious grandson’s blood, bless your hearts. Now y’all sush on out of here. Mercy, mercy me.” This, however, is not my vision of how “maButera” works. In my vision it is a hot-blooded 'hit' of Sicilian proportions!
So I am going with this final explanation - which allows me to feel anger, vengence and rage - to experience the fight (it's not always a dance)! In this theory, "Ma Butera” is a symbol of my innate Sicilian need for vengeance and revenge – a maffia vendetta against the bastard B-cells wreaking havoc on my myelin sheath! Hey, nothing personal, it's just business.
So here is the vision I experience during my infusion with "ma-butera".
The scene begins with what appears to be just normal B-cells just floating around in the blood. In comes the monocional antibody “ma-Butera”, played by Robert De Niro. The B-cells have his attention and gather in a circle.
He begins his oration:
- Life goes on.
De Niro paces around the circle.
- A monocional antibody, like myself, becomes preeminent, he's expected to have enthusiasms. Enthusiasms... Enthusiasms...
- What are mine? What draws my admiration? What is that which gives me joy?
- B-Cells!
The B-Cells cheer.
- T-Cells!
They cheer again.
- Baseball!
They cheer and applaud even louder. And De Niro reveals his baseball bat and leans it over his shoulder and continues pacing slowly around the circle.
- A B-cell stands alone at the plate and faces down the body’s invaders.
- And this is the time for what? For individual achievement! There he stands alone and binds to foreign pathogens.
- But out in the field, what? Part of a team. Teamwork...
- You work with the T-cells and you listen to their signals and produce the correct antibodies. You hand over bacteria to your T cell teammates. You stay on the field and do not cross the blood/brain barrier. Part of one big team.
- Bats himself the live-long day, Babe Ruth, Ty Cobb, and so on. lf his team don't field...what is he? You follow me?
All nod – a little more fearful.
- It’s a sunny day, the stands are full of fans. What does a B-cell have to say? l'm goin' out there for myself. But...l get nowhere unless the team wins.
- Team!
- Team!
And then Deniro, with his bat, starts smashing the heads of the B-cells who have been working against the team - acting on their own, giving false information to the T-cells telling them to attack its own team. The survivors stare at the destruction as the carcasses of crushed cells are swept up by the new team-orientated cells and flushed out through the lymph system. And the cells of the different organs are wearing helmets and are protected from the "maButera's" acts of rage (thanks to the fasting!).
That's my Sicilian Ma Butera vision. Or perhaps I just dozed off watching “The Untouchables” on my computer. Either way, the B-cells are destroyed.
With only an hour to go, I wake up from my vision in a panic and text my photographer and stem cell sister, Amanda, and urge her to come as soon as possible.
- Amanda! There is one final dance to perform – the climax of this whole HSCT recital!” My dance with “Mabthera”. Get in here!
With my Italian self’s need for revenge appeased, and "maButera" taking up the fight, it’s time to laugh to be happy with a dance...or two. So here is my final rendition; my tribute to classic dances in Hollywood film, spanning over a half century. Enjoy!
And then, after all the dancing, the final drops of Mabthera enter into my blood stream and Olga, who loves her cat Marquis above all else, comes in and removes the IV. And that's it. The bulk of the treatment - finished.
The Walk
The following day I wait for Amanda, who is getting her Mathbera infusion for much of the day. I spend time doing some writing, reading and talking with friends and family - drinking lots of water – waiting for that afternoon ‘meal’! I also begin the final day of steroid infusions and the completion of the treatment!
At 2 pm lunch is served, but I put it in the fridge and save the cup of rose hip soup (nyponsoppa) until 3 pm so that I wait exactly 24 hours after finishing the Mathbera infusion. Actually, after the first day, fasting is not difficult, and I am not dying to eat. However, when sipping my ‘nyponsoppa’ as they call it in Swedish, it is a little bit of heaven.
Despite fasting, chemo and mabthera, and a body weight of 158 lbs (72 kg) we manage a really nice walk and take some empowering, or at least interesting, photo shots - I am feeling strong!
We stop in the square where I introduce Amanda to Qi Gong. We do a quick session and I feel so good that we decide to do a short film to show the movement of my upperbody. What is amazing is my left arm, which I could not drop down to my side before Russia, now looks almost normal. Amazing!
Back in the room I ask myself, was the fast worth it? No idea, but I feel great though! Once again, it is one of those things that makes me feel in control, something I am desperate for. And NO side-effects of the Mabthera what-so-ever, in fact my body has as much energy as I have had in months. But best of all though, suddenly a bowl of plain oats with a chopped up baked apple and cinnamon, is a gastronomic tour de force.
After dinner, the nurse comes in and gives me my last dose of cortisone - now, everthing is finished - just need to remove the catheter, rest and wait for my flight home. Once the las cortisone infusion is finished, I immediately start longing for home.